No where to turn for answers.
This is the story of my wife’s life recently:
In May my wife experienced her 1st migraine in her life. Followed by skin darkening above her lip. A CT scan and x-ray showed an arachnoid cyst in her midline posterior fossa with mild effect on cerebellum. Neurologist sees no need for concern ( mind my wife has not had this since birth, and had shown signs of growth in 3 month period ). My wife has had no additional x-ray or CT scan since October. Since then my wife’s condition has downward spiraled and the medical field is failing her. She has been rushed to the ER 3 times with headaches, severe pains throughout body, slurred speech, fever, numbness in legs etc. All 3 times my wife was sent home with unexplained headaches. Recently my wife has started having random subluxation of her SI joints, shoulders and instability in the C1 and C2. A geneticists diagnosed her with EDS due to hypermobility – I’m sorry but EDS is not the underlining problem.
We need help and do not know where to turn anymore.